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I Have Congenital Hypothyroidism

A Congenital Hypothyroidism anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Congenital Hypothyroidism. You're not alone. 51 People

    I was born right around the time screening

    became procedure for newborns. When I was five days old, my underdeveloped thyroid was destroyed with radio-iodine treatment. It was never explained to me why I took pills every day growing up. The word hypothyroidism was thrown around when I asked about it and that was all I...
    riciamitchell85 riciamitchell85 26-30 Feb 17

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    I Have Congenital Hypothyroidism

    Oddly enough, so do my three sisters. I am told this is very rare, and I have had medical staff not believe me in the past. One of my sisters has had her thyroid glands removed in the hopes that this would "fix" her problem and the complications she was experiencing- it did not...
    AnyoneLived78 AnyoneLived78 31-35 Apr 21, 2011

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    Ch And My Baby

    My mother was diagnosed with "the worst case of hashimotos" her doctor had ever seen about a year before I got pregnant. We had never really heard of this disease before, but as we dug into it we discovered that I exhibited a lot of the symptoms associated with hashimotos. So I...
    Jan 9, 2013

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    My Child Has Ch Has Been Treated But Still Has Symptoms

    My daughter was diagnosed at 5 days with ch and has had her thyriod levels in control but still has symptoms of sleepiness and tsometimes dry skin. Has anyone experienced this or is this normal? She's a month old now and I,m afraid somehow the levels are normal but somehow she...
    Sebastian2012 Sebastian2012 36-40 1 Response Apr 8, 2012

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    I am 29 years old and I was diagnosed with

    Congenital Hypothyroidism at birth. I have gone through childhood with no symptoms, but in my early twenties I developed psoriasis on my elbows, knees, ears and scalp! I have also found that I suffer from chest infections and find it difficult to shake off illnesses, often...
    v1xenb v1xenb 26-30, F May 2

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    Congenital Hypothyroidism

    My 11 week old daughter has a large soft spot. when looking this up online I discovered ch. I've read a few stories about it but everybody else has posts about their children being diagnosed within birth to 3 weeks. She seems to have a lot of the signs associated with ch...
    jellybeanseam jellybeanseam 26-30, F Mar 30, 2012

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    Mothers Who Has A Child With CH!!

    This is for the parents who have children with Congenital Hypothyroidism. Its ok. Yes it's scary to find out that your new baby has it but don't worry. If you give them a proper diet, take them to get their lab work done, give them their medicine properly, DONT FORGET TO GIVE IT...
    MissChuck MissChuck 18-21, F 1 Response Jun 17, 2013

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    My 2 Weeks Daughter Has No Throid Gland .... Congenital Hypothyroidism :(

    Hi to all the survivors , fighters , defeaters and sufferers of hypothyroidism ,this is my first time on any kind of internet forum ... my pain & my helplessness has dragged me here...here's my story :My daughter just recently born 2 weeks old... has been diagosed with...
    shockednewmum shockednewmum 22-25 7 Responses Apr 28, 2011

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    Levoxyl Vs. Armour

    What has your experience been?
    AutumnBreez AutumnBreez 41-45 Dec 22, 2008

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    Our Little Man

    Our little man is sooo perfect but it was a hard pregnancy! He tried to come at 32 weeks (I enjoyed the mag, steroid shots,hospital bedrest, and the NICU on standby) but he held off like a fighter! At 39 weeks and Christmas Eve he decided he was ready to make an appearance...
    musiqueducoeur musiqueducoeur 31-35, F 2 Responses Aug 6, 2012

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    My Daughter Has Congenital Hypothyroidism

    My 17 month old daughter was diagnosed with congenital hypothyroidism when she was ten days old. Her newborn heel-***** screening came back abnormal and we had to get a CT scan done on her before she was 2 weeks old and start her on Synthroid. I've been squirting...
    katie111 katie111 26-30 27 Responses Mar 15, 2009

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    My Daughter Was Born With Ch

    My little baby was born in Russia in 2006. She was diagnosed with congenital hypothyroidism on 11 th day. I thought My life ended, since I knew nothing about it. I was blaming myself constantly, trying to find the reason. Now she is 5 and I would like to say she is absolutely...
    Masha12071979 Masha12071979 31-35, F Aug 7, 2011

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    My Daughter Also Has Congenital Hypothyroidism

    Nine years ago, I gave birth to a beautiful little girl. She was my first child after 6 years of marriage. Regardless to say, she had a perfect APGAR score - was healthy and of course such a good baby. At around 5 weeks she was diagnosed with CH - we picked this up only because...
    mychstar mychstar 36-40 5 Responses Aug 1, 2009

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    Yup. I have it. I've gone several times

    skipping my pills due to choice and at times I couldn't afford it. I'm 23 years young. It's rough, but possible. I always feel great when I get my medication. So happy, awake, and clear-headed. I love coffee when I feel "foggy", and so help me...I hate to feel stupid. I am smart...
    alschul6 alschul6 22-25, F 1 Response Apr 23

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    Dont Let This Happen To Your Kids.

    I was born with Congenital Hypothyroidism. When I was a kid, I rememeber taking my meds every day but I never knew why I had to take them. My parents never told me. All they said was that I was "sick". So day after day I continued my meds, and every 3 months I went to the doctors...
    MissChuck MissChuck 18-21, F 1 Response Aug 10, 2012

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    Congenital Hypothyroidism

    I have a son born 1959 who has congenital hypothyroidism. Unfortunately, not like now, there was not test and not hardly anyone including my doctor had ever heard of it - beggars belief. After noticing he was not looking normal at about 2 months old we took my son everywhere to...
    junekath36 junekath36 70+, F Sep 13, 2013

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    26 Yes Old Mommy Of 2

    My name is Crystal I was born with congenital hypothyroidism. I am a normal person, I do forget my meds alot which is bad, I have no medical insurance, I am completely normal, graduated from high school and now college also I have two daughters one 4 Brooklyn) and the other 1 1/2...
    mommyof2girls0305 mommyof2girls0305 26-30, F 1 Response Sep 25, 2013

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    I Am Nearly 33 And I Have Congenital Hypothyroidism

    i don't remember much about my childhood apart from the 6month checkups and blood tests to see if i had grown. the endless bone age xrays to see how my bones were growing. i have many spells of actually not taking my medication, for periods of days to weeks without it. i know i...
    saz32 saz32 31-35, F May 15, 2012

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    Related Experiences

    Okay so I'm only 15 and when I was younger (about 3 or 4) I was diagnosed with hypothyroidism. I've never felt like I've fitted in with anyone and I'm very shy and unconfident...
    Isabella295 Isabella295 16-17, F 2 Responses a week ago

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    Started synthetic T3 and T4 but about 3 weeks later I felt very anxious and fingers were tingling and numb. Starting T4 meds again (gen. Synthroid) - worried it will happen again...
    squirrelbounce squirrelbounce 36-40, F 1 Response Jul 8

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    I am now 29 years old. I had half of my thyroid removed in year 2000 when I was 15 due to a benign tumor removal around that thyroid gland. Since I still had the remaining half of...
    zhiyunq zhiyunq 26-30, M Jul 8

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    I was just diagnosed with Hashimotos this last week. My dentist told me to go get my thyroid checked. It turns out I have hashimotos. They had me do a sonogram and they also found...
    Kylee94 Kylee94 18-21, F 2 Responses Jul 14

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    Anybody else agree with this? 😔 Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now...
    sarahglass sarahglass 18-21, F 3 Responses Jul 22

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    I am horrible at taking my pills. I got my blood tested yesterday and it was so high after 100 the whatever they use to get my thyroid hormone levels stopped measuring. So they don...
    Arelia Arelia 18-21, F 6 days ago

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    Has anyone had any luck in finding something to help loose the extra weight. I have bought every work out there is and tried changing my diet.... I used to be so tiny, I am 5'0 and...
    SoberJessica SoberJessica 31-35, F 1 Response 1 day ago

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    I have been on Sythroid for almost 2 years now. I have heard that its not the best to take, my dosage is 125 mg Has anyone had bad experiences and been switched and noticed a much...
    SoberJessica SoberJessica 31-35, F 2 Responses 1 day ago

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    It's taken me and my sister a very long time to realise that our mother is passive aggressive. We always thought our mother was selfish and wanted the world to revolve around her...
    Cupcakes95 Cupcakes95 36-40, F 8 hrs ago

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    How To Have Weird Dreams.... We spend half of our lives asleep and dreaming. Often we wake up fascinated the next morning by what passed in the night when we weren’t even fully...
    nivanvc nivanvc 36-40, M 2 hrs ago

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    I wonder why I'm steadily gaining weight. I was diagnosed with Diabetes Insipidus two years ago and all of these stories on this page are very accurate - the discomfort, getting...
    caroline6391 caroline6391 22-25, F 4 hrs ago

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    So scary. I was waiting for the train & began to feel nauseous. I was holding my phone in my hand and could see that I was beginning to sweat like crazy. My phone was drenched. I...
    brunettebarbie14 brunettebarbie14 18-21, F 2 hrs ago

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    Hi everyone! I used to be known as poopypants90 around here. I wanted to let you all know that my old EP account got deleted along with all my stories and pictures. I guess it was...
    Poopypants80 Poopypants80 22-25, F 2 hrs ago

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    December 2012, both my husband and I were questioned for child abuse after we took our child in for a check up and petechiae and bruises were found, but the Department of Family...
    minilule minilule 18-21, F 1 Response 1 hr ago

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    Today, I feel sad. I continue to think about my childhood and how my life could be different if I were raised differently. Maybe I wouldn't have such anxiety problems or I'd be...
    CatLover311 CatLover311 22-25, F 2 Responses 1 hr ago

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    I feel the need to post this to ensure other EP members know a little about me before judgement is passed. I am not here to harass, bully, take charge or spam/troll. I am merely...
    Ifilayhere Ifilayhere 31-35, F 3 Responses 31 mins ago

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    Some people are just better at hiding it than others. Others wear their heart on their sleeves. Others wear a mask to show others they don't have any problems when in actuality...
    islanderg1rL islanderg1rL 22-25, F 22 mins ago

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    My family has way too high expectations of me... I have to be the perfect kid, I have to make amazing grades I have to be skinny and fit and athletic, social and nice to everyone...
    Tayway22 Tayway22 13-15, F 2 Responses 13 hrs ago

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    I have long hair. I have long weave. I just have curly hair that looks better straight and straight weave that looks better curly.
    Alylovespuppies Alylovespuppies 16-17, F 10 hrs ago

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    I wanted to tell you all last night but I was to tired so here's what happened last night! I have been dating Kirk for about six months now and we have a great time together. He...
    JoMumOfFour JoMumOfFour 41-45, F 7 hrs ago

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    if your girlfriend's/boyfriend's head were switched with your mom's/dad's and you had to have sex with her/him to switch their head back, would you rather have sex with your mother...
    dasosleefi dasosleefi 16-17, F 2 Responses 3 hrs ago

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    I have a 20 year old son that is bi-polar 1. He sucks the energy and life out of us. I love him but resent him and what this illness has taken from our marriage. I exercise...
    debbiedee623 debbiedee623 51-55, F 3 hrs ago

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    When asked about their ethnicity, most people of different nationalities just say, “I’m German.” Or I’m English”, but Americans… Oh NO! They have to give you a math...
    fishsweeper fishsweeper 51-55, F 3 Responses 2 hrs ago

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    Today is my birthday. Yesterday night, i gave myself one of the best gift i have ever given myself. Bravery. Bravery to face my fear. To face my broken heart. To face the love...
    butterfliesndut butterfliesndut 18-21, F 5 Responses 2 hrs ago

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    April 27, 2011 my work called and told me to stay home for the day because bad weather was expected. I began watching the local news at 9:00 AM. I have an obsession with tracking...
    reelman4372 reelman4372 31-35, M 2 hrs ago

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    I was Dx'd in '11 just before I dropped dead. For ten years and after many MRIs showing partial empty sela, and docs saying it was "all in (my) head" (no ****), extreme lethargy...
    EWoman1 EWoman1 31-35, F 53 mins ago

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    Everyone that has shared a similar experience all have one thing in common, we all say 'but I love him'. I hear your stories and can relate deeply to them. There would be nothing...
    Smiles4u2014 Smiles4u2014 41-45, F 12 hrs ago

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    when your parents notice cuts i moved to my fist. i beat myself till tears ran forth like the river of sorrow in my heart. the bruises you cover. start wearing a shirt to bed so...
    saint0928 saint0928 18-21, M 12 hrs ago

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    The only thing that bothers me with this condition is to get caught in the act. They daydreams have now become too real and vivid that I now use gestures—standing, walking...
    Ontokki Ontokki 18-21, F 1 Response 11 hrs ago

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    I have done corner time more times than I like to think. Off mum used to make us stand in the corner as a punishment in itself. Like if we were arguing or fighting among ourselves...
    Jilly53 Jilly53 56-60, F 3 Responses 10 hrs ago

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    So my boyfriends graduating from boot camp tomorrow, I'm sooo proud of him for sticking it through it :) I really want to be there tomorrow, since it's only a 5 an half hour drive...
    brandijade92 brandijade92 18-21, F 6 hrs ago

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